I will have an even bigger update for you guys over the next few weeks. Reagan has some pretty big appointments coming up, and we see genetics next week and have been waiting for some long awaited results. So for today I will tell you that since her last hospitalization she is doing AMAZING.. I mean AMAZING! She is truly such a fighter! And we couldnt be more proud of her. During her two week admission a lot of changes were made. She went from being on a higher calorie formula pre-admission, which allowed her time off of her feeding pump, between 5 and 7 hours a day depending on the rate at which her feed was running. She is now on a lower calorie formula which forces her to be back on 24/hr. continuous feeds. SO that means that she is attached to the feeding pump 24/7, which lifestyle wise is a bit harder for everyone. BUT it has also allowed this sweet baby to FLOURISH.. she had soo much abdominal pain and distention it prevented her from learning new skills. Since she no longer has a beach ball in her belly she is so much more comfortable. It was like a switch was flipped and she became a little person again. She started using the signs that we had been teaching her for months. She is crawling like a maniac moving obstacles in her way by tossing them aside (much like her life), and she is trying to communicate by using the signs she recently learned. She still doesnt talk, but she says dada and babbles a lot, so we are thrilled of her new found appreciation of sign language!!! We have a way to talk even if she cant verbalize it. There are still some communication barriers, we dont always know what she wants or what she is trying to tell us and she gets mad sometimes. actually its a mutual frustration. Ever wish you were a mind reader? I do! We are going to be adding a communication specialist on to her early intervention team. SO hopefully with this addition to her team her communication will improve and help her continue to flourish! Some of the other changes that were made that helped make her more comfortable is that she no longer gets anything in her stomach! NOTHING no MEDS, no need to clamp her stomach, nothing. All meds, all of her feeds and flushes go through her J tube (the first part of her small intestines). Her stomach is being vented by a much larger tube and larger bag, which has helped dramatically reduced the size of her belly. She recently had a swallow study which showed that she was safe to take things by mouth, but because of her GI issues it would mean anything in her stomach can be re fluxed up and she can aspirate on it. SO volumes of foods arent safe sitting in her stomach..but since she is being vented 24/7 we can give her little tastes to help with her oral motor skills, and we are so excited to be able to do this!! She was also treated for bacterial overgrowth. Easy explanation: We all have good and bad bacteria in our guts, bacterial overgrowth is an over abundance of bacteria growing in the gut, which can cause a lot of belly pain and swelling. GI said that kids with GI dysmotility can have recurrent bouts of bacterial overgrowth. Her GI dysmotility issues, which means things dont move through her fast enough. her gut moves like a slug. and when things arent moving through fast enough it gives the bacteria a chance to overgrow. So, Today GI decided to do more formal motility studies. Not that it would change the way they are treating her, as I mentioned in previous posts, there arent many GI motility treatments and we are giving her the best treatments possible. So they feel that if they can say for sure what her motility looks like we will know more about what to expect going forward. GI also thinks that the high calorie formula is too much for her body to digest. She weighed 8.9kg (19lbs 6oz) for the first time in January. She dropped in weight several times since Jan., and worked so hard to gain it back only to drop back down..never passing 8.9kg. she lost 2.2lbs while in the hospital and only has 1/2 lb left to gain, to get back to the 19lbs 6oz! This is an amazing weight gain, and we hope that she continues to grow and thrive past that! Part of it could be her underlying genetic condition. So for now, we will stay on continuous feeds for the next 3 months and watch and see how shes doing since so far she is tolerating the lower calorie feeds and she is gaining weight! BTW we arent giving her less than the required calories, we are giving her a less dense formula making it easier for her belly to digest. She is getting the needed calories, thats why she needs to be fed 24/7 so we can give her all the calories she needs to grow and thrive. Hope this all makes sense. I never know quite how much to tell you all. But a very dear friend of mine recently told me that she needs to know all the gory details, so she can better understand all the Reagan goes through. She also said it makes her feel better when I make posts so she knows I am OK and hanging in there. SO here is my very long post. We are here and we are all doing pretty AMAZING right now, a little sleep deprived but happy to be home and happy to be doing well!
Posted on: Thu, 31 Jul 2014 00:54:54 +0000
Trending Topics
Recently Viewed Topics
© 2015